Genetic Testing Guidelines*

*Early Warning, by David H. Smith et al. Indiana University Press, 1998

I. Predictive Testing of Children:

  1. We can refuse testing to acquire information that is likely to damage the child psychologically or socially, that enables no enhanced medical care, and that is irrelevant to the decisions of a loving family during a child's formative years.
  2. Minors should not be test unless there is a medically compelling reason for doing so, i.e., an at-risk child is believed to be showing symptoms. However, under no circumstances is testing a substitute for a thorough neurological or neuropsychological workup…Parental anxiety does not constitute a medically compelling reason. (HUDSA 1994).
  3. Request by potentially adoptive parents - They are not the parents - they want the test in order to decide if they are willing to become parents. There is a 50% risk of substantial loss to this child. Placement for a known mutation carrier would be much more difficult than for a child whose genotype is uncertain. Loss of autonomy to the child. Adoptive parents should be informed of factors that bear on the child's health, but what is the value of informing of a late-onset disorder - will this set a precedent for genetic testing of all prospective adoptees?
  4. "Morale Education" - The counselor is more than a source of information - the counselor must explore the implications of choice through a collaborative relationship.

II. Insurance:

  1. If an at-risk individual has applied for health or life insurance and has authorized the disclosure of information to the insurance company, a counselor should make no effort to mislead the company.
  2. The counselor has no obligation to volunteer unrequested information to an insurance company.

III. Confidentiality:

  1. Counselors are ethically obligated to maintain confidentiality.
  2. Confidentiality may be breached when doing so is necessary to protect public safety. This exception is only applicable when the needs of public safety are real, pressing and demonstrable.
  3. The counselor should work with the individual to attempt to devise a way to protect public safety without breaching confidentiality. Confidentiality may be breached in an emergency or if efforts to work with the individual have failed.
  4. Counselors should not breach confidentiality to inform individual's employer except in circumstances of public safety.A professional's ethical duty of confidentiality to an immediate patient or client can be overridden only if several conditions are satisfied:
    • Reasonable efforts to elicit voluntary consent to disclosure have failed;
    • There is a high probability both that harm will occur if the information is withheld and that the disclosed information will actually be used to prevent the harm
    • The harm that identifiable individuals would suffer would be serious
    • Appropriate precautions are taken to insure that only the genetic information needed for diagnosis and/or the treatment of the disease in question is disclosed.

IV. Prenatal Testing:

  1. Do the consequences of denying prenatal diagnosis when the at-risk parent does not wish testing, outweigh the risks to that parent of performing the test?
  2. Active counseling with the couple - is partner aware of the consequences and implications to at-risk partner if test is insisted upon? Is partner aware of the message to the at-risk partner?
  3. Must counsel about undesirability of predictive testing of children for untreatable late-onset disorder.

V. Testing of Individuals at 25% Risk:

  1. One family member's preferences, even justified, are not in themselves a sufficient reason to refuse a test to another family member.
  2. An adult child has the right to information, even if their at-risk parent does not wish to clarify their own status.
  3. Must counsel the 25% risk individual regarding the possible detrimental effects on other family members. Make sure they understand the implications of their own test result - think through the choices they are making. Every effort should be made to include family members in counseling to attempt satisfactory resolution of conflict.


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